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Friday, December 16, 2016

Facing Forward: Lene

Facing Forward
is a series that shares the lives of people living with arthritis and
other invisible chronic illnesses. The goal of the series is to see how we are
similar and how we are different - and to remind us to keep moving
forward because we aren't alone!

Name: Lene

Location: Toronto, Canada

Diagnoses: Juvenile arthritis, fibromyalgia, migraines

Age at Diagnosis: I was 4 when my juvenile arthritis started, but wasn't diagnosed until I was 9 years old. I've had migraines since my teens, and developed fibro in 2004.

How are you currently treating your condition?
I'm primarily using a biologic to treat my JA and miracle of miracles, it is working! There were no treatments for the disease for most of my life, so it's astonishing to finally experience what it's like when something works. Because it's taking care of my autoimmune arthritis, my fibromyalgia is quieter than it was when things were active. It is still there, though. I mostly treat that with a variety of painkillers and muscle relaxants. I also try to meditate, but I'm bad at remembering to incorporate it in my every day. I've used a variety of alternative treatments throughout my life, but as things are pretty good right now (knock wood), there is less need for that. I see a doctor of naturopathic medicine several times a year, though.

What are the biggest challenges you have faced since your diagnosis?
Over the last 50 years, there have been quite a lot, but if I think in terms of the absolute biggest, there are two. One is having to use a power wheelchair since I was 16. Because there were no treatments when I was growing up, the disease wrecked every part of my body. Starting to use a wheelchair was actually liberating - I'd spent the previous two year lying in a hospital bed waiting for custom-made hip replacements. When I was 16, I had both hips replaced and that enabled me to sit up again, go home, and create a life. Still, having a disability is one hell of a challenge in a world that is made for the able-bodied.

The second of my big challenges was the big flare I had in 2004. It was the second time my autoimmune arthritis tried to kill me and that time, it came pretty close. The flare burned so high and so bright that the only way I could see out of it was to commit suicide. I gave myself a deadline, but thankfully the funding for Biologics came through first and the medication worked.

Come to think of it, there's been an additional challenge. Earlier this year I got the flue, which thanks to my asthma (forgot to mention the asthma) turned into pneumonia, which turned into something even nastier. I spent a long time in the ICU on a ventilator in an induced coma, and had to have an emergency tracheostomy. That itself was a challenge, but recovering has been quite difficult, as well, especially the emotional aftereffects.

What are your favorite tips and tricks for managing everyday tasks?
Reachers are an essential part of my life, but not the ones made in North America. The fact that you have to squeeze the handle in order to keep the grabbing tongs closed is completely ridiculous when you consider that someone who needs a reacher likely has dexterity or strength issues. I've found this fantastic reacher that is made in Sweden, but can be found for sale in the US. You squeeze the handle to open the tongs and they stay closed when you let go! It's significantly more expensive than the North America-made reachers, but very durable and well worth the money.

I also use forks for a lot of things besides eating. They are excellent for opening Ziploc bags (stick the tines in between the interlocking plastic to create a gap), as well as pop cans. And I take a nap every afternoon. Without it, my pain levels would be skyhigh. To avoid people making ignorant comments about how nice it must be - because we all know that a nap is not an indulgence when you have a chronic illness - I call it my mandatory rest period.

How do you manage to keep facing forward every day?
The big flare I had 12 years ago taught me a lot. Getting my life back was a miracle, a second chance that I take seriously. I decided to stop pretending to be doing better than I actually was and find a way to be the person I'd always wanted to be. I work hard to look at what I can do, rather than what I can't, and to find the positive in every day. Living authentically and focusing on joy is hard work, but I am so much happier now than I've ever been, even though I in many ways am more limited than I used to be.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Cry as much has you need to cope. And know that you can cope with this and have a good life.